Saturday, September 24, 2011

for my Mito mom friend

 

Infantile Spasms is a diagnosis. 

 

 

And a marker.

 

 

Or symptom…if you will.

 

 

A symptom of something else.  Because once you enter Infantile Spasms Ville you quickly learn that seizures in and of themselves are not the final diagnosis…they are a symptom.  Of an underlying cause.  And in the world of Infantile Spasms there are many underlying causes.  Each underlying condition a spectrum.

 

 

Spectrum according to Dictionary.com:

 

  a broad range of varied but related ideas or objects, the individual features of which tend to overlap

 

 

You knowThe same but different

 

 

Each IS baby has a unique journey.  And those that share the same Underlying (spectrum) Condition do too.  Each Cortical Dysplasia child.  Or baby who had a neonatal stroke.  Or has Tuberous Sclerosis.  Or Dravets .  Or Mito…

 

 

(to name a few)

 

 

All have unique paths that unfold.

 

 

One thing that rings true for all (that I’m aware of) IS children and their specific underlying conditions…

 

 

There is NO cure

 

 

There are miracles here and there. Some children respond quickly to treatment and move forward without scars until Infantile Spasms is but a distant memory.  That maybe you had a nightmare once-d.  But the majority of families move forward into a journey that…while it brings it’s own sense of joy because our children do bring joy…is much different than the one we ever imagined they would travel.  Much harder.  Much darker.  Much more medically complex.  Drug and therapy saturated.  Tear and prayer drenched.  Than we could have imagined.

 

 

And we live each day trying desperately to love our children to the best holistic health humanly possible. 

 

 

And we spend our free time dreaming about the day there will be a Cure. 

 

 

This week is Mitochondrial Awareness Week

 

 

And while Trevy’s underlying condition is not Mito…

 

 

he does have a sweet little (arranged) friend on the other side of the country who does.  And his friend has an extraordinary mommy…to whom my heart has connected. 

 

 

And today…I’m praying and dreaming for Hudson. 

 

 

image

 

 

And this post is my way of helping create more awareness for all the children and their families courageously living with Mitochondrial Disease.  

 

 

XOXO Hudson & Mommy

 

 

danielle

4 comments:

Debbie said...

I'm teary eyed, as my heart is beating rapidly reading, finding in the end it is we you are speaking of.....because you are one rare friend who is not directly affected by this disease, but took the time to listen, care, share and spread awareness....and it means more than I could possibly put into words!!! Seriously....I love you my sweet, sweet friend!!

happy's mommy said...

XOXO

...d

blogzilly said...

Dig the new header. I say 'new' because it might not BE new, a lot of times I read right from the feed I get.

This really got me:
'Much harder. Much darker. Much more medically complex. Drug and therapy saturated. Tear and prayer drenched.'

I hate IS...I consider it a stalker. It is merciless and it strikes kids who can ALREADY have existing diseases/disabilities, to hit them over the heads with additional life FU's.

Can't stand it.

Catastrophic...

danielle said...

Kenly...no worries - I read yours via feeder too. :)

...danielle